A family helping a girl explore her world through the lens of autism

We are starting to adjust to the diagnosis a little better, although the magic word ‘Autism’ won’t take away frustrations, meltdowns and communication barriers, it helps frame them for us.

Much of our spare time (admitted this is limited) is spent assisting Jenna’s siblings to understand the complexities of autism and trying to differentiate behaviors, meltdowns and ‘just being a naughty kid.’ Patience and the art of walking away from concerns, fighting, arguments have been our focus. We have had some little wins but all the 4 children have a point.

At times it’s not fair!

Family dynamics are interesting and the older girls are really finding it difficult to ‘give Jenna space’ and at times feel the brunt of her ‘meltdowns’. I’m finding that teaching 2 strong willed teenagers to walk away and not engage is a loosing battle.

We do get a glimpse of their affection for her and party planning seems to be a big winner these past weeks. To their credit they have gone above and beyond with; lists, games, food and a detailed 10 minute interval timetable.

Gymnastics have started back and this has proven to be a God send for Jenna. This gives her a chance to push her boundaries, explore new heights and safely be ‘a little crazy’. Jenna is now planning to compete in a regional comp next term and wants to double her training at the center, this gives me a solid 2 hours Uni study so no complaints from me (Although I have a little concern about this, as loosing is never an option for Jen).

Her school has been fantastic and will call when routine changes or if they are concerned or need clarification. We had her teacher leave after 1 1/2 weeks into the term, this was explained with dignity and Jenna was given the time to adjust and had the space she needed to process this information. We had a few rough nights, but the change has been fairly uneventful.

Because of the above we have seen fantastic School attendance thus far and have only had 1 day sick these past 3 weeks, Phone calls to dad at 3:15pm are also diminishing (in the past have been known to get over 10-15 calls in an afternoon).

School has helped Jenna with her bedtime routine for the most part; and mum and dad have had several days of peace and quiet after 8pm (we mostly fall asleep by 8:45pm though).

The diagnosis of ASD has meant more conversations with professionals , more registrations with specialist teams and signing more forms. We have placed Referrals with Autism Queensland , Disability Services Queensland and after another assessment will gain referrals for a speech pathologist and OT.

A School visit is booked with Autism Queensland and this assessment will establish the services they can offer Jenna both at home and school.

School funding is organized and Jenna is being assisted by a specialist teacher in the interim in a consultative manner until the above assessments take place. Completing these steps and having gone through the formal diagnosis process has started to change the perception and the level of engagement people have had towards us and Jenna.

It is both sad and encouraging that we needed to wait for a formalized ‘disability’ diagnosis until people took time to acknowledge that Jenna’s behaviour’s aren’t a parenting problem or naughty child syndrome. I am hoping that over time I will spend less time apologizing, explaining and education on what ADS looks like for Jenna. I am wanting to spend my energy playing, celebrating, and boasting about her achievements, not apologizing for her perceived shortcomings.

That will be a good day.

On a practical note it seems that puréed fruit, cheese, chocolate milk and fruit sticks (the sugary type) mixed with Foxtel (cable tv) make the afternoon bearable for all.

Then off to the park for gymnastics , a swim or a bike ride to rid those horrible words ‘I’m bored’ that no idea will fill the void.